HIV: Violations or investments in women’s rights?

In the context of widespread
sexual violence and its reciprocal links to HIV, Alice Welbourn reports on how the formal scientific
evidence base alone is beginning to be recognized as not fit-for-purpose to
safeguard women’s rights.

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I have just returned from an
inspiring conference organised by the Swiss “aidsfocus” consortium in Bern,
entitled “Addressing sexual violence and HIV”. These two issues are
closely and reciprocally linked, yet to date, most AIDS NGOs have paid limited
attention to this fact. The presenters described examples of these links in
rural South Africa, where a young woman is more likely to be raped than to
learn to read; from DRC where rape was used as a weapon of war; and from Switzerland where a woman accountant with HIV
who survived mass rape in Cote d’Ivoire experienced more rape whilst escaping through Libya and Italy now
seeks to rebuild her life.

Globally the World Health
Organization (WHO) states that 1/3 of women will experience physical or sexual violence by a
partner or sexual violence by a non-partner during their lifetime. The European
figure is 25%. Women and
girls who have experienced intimate partner violence are on average 1.5 more
likely to acquire HIV.

Those who experience sexual
violence are rarely able to protect themselves. They come from all stages and
walks of life. Orphans aged 5 in Tanzania daren’t tell anyone they are
being sexually abused for fear of being accused of lying, of being beaten and
no longer being loved. Many of them acquire HIV through this sexual abuse. Rape is commonly reported by transgender women and
19% of all transgender women globally have HIV. Young lesbian women in South Africa are raped repeatedly to
“cure” them. Young London women who escape gang culture say rape is the weapon of choice since
it can’t be detected by police in “stop and search”. Sex workers with HIV get
beaten by their clients in Senegal for refusing condomless sex. South African women ensure their daughters
have hormonal contraceptives to ensure that when they are raped they
won’t get pregnant. 42% of women living
with men who inject drugs in Georgia have been physically abused by their partners. And many women who are unable to negotiate condom
use with their partners, experience daily sexual violence of state-sanctioned
“marital” rape. Yet this too is sexual violence, often offering the risk of
unwanted pregnancy, STIs and/or HIV - though hardly ever recognised as such.

Why is the world so silent
about sexual violence, from whatever quarter? Partly because it is so
widespread that many take it as the norm, these encounters with violence result
in continued fears, violations and resounding silences. This helps to explain why there has also
been minimal awareness of the widespread links between sexual violence and HIV
described above, beyond the specific horrors of conflicts in Rwanda or DRC.

It was hard enough to start
to talk publically about having HIV myself. It seems even harder to talk about sexual violence.
Why is this? Getting attacked, being violated, physically or sexually abused:
that fear can stalk every one of us as girls and women throughout our lives.
It’s perhaps that constant fear that we might get “blamed” – and blame ourselves - for someone violating us,
for “putting ourselves in danger”, that keeps us mute. And while the silence,
fear and blame continue, sexual violence will continue to ensure that the
threat of rape and/or HIV for women is alive and kicking.

Even compulsory HIV tests,
especially if they result in violent consequences, are a form of violence.
Sexual violence is closely linked to physical and psychological violence. All three entail making decisions over what happens
to another’s body or mind. Although recent WHO Guidelines state in
their preamble that all testing for HIV should be voluntary and confidential,
this is not explicitly spelt
out in the section on testing during pregnancy, when any woman is at her most
vulnerable to violence anyway. Instead, in this section, WHO states: “Provider-initiated testing and counselling is
recommended for women as a routine component of the package of care in all
antenatal, childbirth, postpartum and paediatric care settings.” By contrast, every time medical male circumcision is mentioned
throughout the whole document, it is prefixed with the word “voluntary” for
emphasis. The absence of this critical word in the section on testing during
pregnancy is therefore all the more marked.

This lack of the word
“voluntary” in this section is a major omission, since there have long been
many widespread reports of healthworkers making HIV tests for pregnant women compulsory to access ante-natal services.

When challenged on this by myself
and colleagues, the WHO HIV Department emphasised that their Guidelines say testing should always
be voluntary and confidential. However, one honest senior HIV doctor from
Malawi stated in 2012 “we never thought to ask the women if they wanted to
be tested or not.” But such glimpses of human rights awareness are however
frighteningly rare in the world of HIV.

For many women this
compulsory test leading to an HIV diagnosis during pregnancy sets off an
avalanche of human rights abuse. This diagnosis often starts or exacerbates violence for women, not just in healthcentres, but
from partners, from in-laws and from states also. Tales
of lack of confidentiality also abound. Healthworkers often abuse women with HIV further,
once they are diagnosed. A recent study of 750 women with HIV in the
Asia-Pacific learnt that 1/3 of them had been encouraged by healthworkers to
consider sterilisation and over 10% of them had been told they had no option. This is another violation of these women’s sexual
and reproductive rights. There is no other health condition – inheritable or
otherwise - than HIV for which sterilisation is so routinely encouraged so
widely imposed on women. If men with HIV were being sterilised, there would be
outrage, and rightly so. Yet such routine state-sanctioned abuses, where women
with HIV are forcibly sterilised, are widely ignored. Moreover, it is now
possible, if women receive the right care, support and medication during
pregnancy, for children to be born 98% HIV-free, through normal vaginal delivery.

Why is there so little
recognition of sexual and other violence against women in global HIV policies?
In part because there is still insufficient formal “evidence base” for its
widespread practice in healthcare settings as well as from partners. The formal
“medical evidence base” is lagging behind widespread “anecdotal” narratives
of abuse. Yet, “absence of evidence” of such rights violations still
does not mean “evidence of absence.” And in part because we are still facing
the global legacy of patriarchal forms of healthcare, where it is still assumed
that healthstaff have the right to tell anyone in their “care” what to do.

Yet there is a chink of hope.
New Guidelines from another WHO Department, entitled: “Ensuring
human rights in the provision of contraceptive services and information”
recognises publically at last the limitations of the current formal research
process to address the complex non-linear, socio-economic and political
determinants which shape the lives of most of us: and which most certainly fuel
and fan this HIV pandemic for women. These new Guidelines on contraception state: “Given that the
realization of human rights within contraceptive information and services is
not a research area that lends itself to randomized controlled trials or
comparative observational studies, much of the evidence available for the priority topics could not be readily synthesized using
the GRADE approach
[which grades the strength of evidence].”

Acknowledging
these limitations, human rights considerations were nonetheless incorporated
into these Guidelines, even into the title. At last we have a breakthrough: a
recognition that the formal evidence base alone – which was historically
created by male scientists to conduct scientific experiments in laboratories -
is not fit-for-purpose to safeguard women’s rights. Just as human rights lawyer Helena Kennedy has
argued that we need a feminist approach to overhaul our patriarchal legal systems,
so we also need a feminist approach to overhaul our patriarchal healthcare systems. Hippocrates understood this over 2,000 years ago
when he stated: “It
is more important to know what sort of person has a disease than to know what
sort of disease a person has”. We all need
global policy makers and healthstaff alike to return to grassroots, to listen
to and ensure the human rights of those most affected by HIV, to learn from
them about how to create workable solutions.

Change
can happen. A village headman in Malawi, who had acknowledged abusing his wife
after an intervention to stop vioence stated: “I stopped the abuse and changed
after members of the Coalition of Women living with HIV and AIDS (COWLHA) came
to my house and counselled me that what I was doing was violence.” He and his
wife now support all their community to overcome violence too.

Change
happened when the Malawi doctor described above honestly declared his ignorance
of human rights. And change has happened in the title of the new WHO
Contraceptive Guidelines.

Change
was happening in the Swiss conference, when all those present agreed to ensure
that their own NGOs draw up clear guidelines to respond to sexual violence when
experienced by staff or the communities they serve.

And
change must now happen across all global HIV policy documents also.

“Are positive people there as
tokens or are they effectively making decisions? Are affected persons involved from A to Z? Democratic and inclusive processes are
essential to achieving human rights, and are at the core of better governance
and better health outcomes.”

The UN should listen to its
special rapporteur. We need massive investment in programmes and policies, shaped and led by
principles of women’s rights, which overcome sexual violence and the men’s
shame which drives it. This shame is often generated through inequality, exclusion, oppression and anomie. We need to make the world a safer, happier place
for us all. I trust that sexual violence will one day become as outrageous as
the thought of forced sterilisation – or forced vasectomy too, for that matter.

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